Thursday, April 10, 2008

The Point of Awareness

“The point of awareness for autism is to try to get a cure.”

I found this comment at the Anderson Cooper 360 blog last week. Correspondent Randi Kaye had written there about a young man named Dylan, interviewed for the CNN show. Here are two more quotes from other commenters on the same post:

“It is heartbreaking to see these kids. I am not sure if we will be ever able to find a cure or know if it is vaccine or genetics.”

“Thank you for bringing to light yet another face of this awful spectrum.”

What had these people been reading and watching? Something about self-injury or toileting issues?

This, in part, is the story of Donor X, who has fathered several autistic children via California Cryobank (CCB). Gwyneth Jackaway, mother of Dylan, chose Mr. X. as a sperm donor based on his IQ, interests in music and philosophy and his economics degree. She was rewarded with a beautiful son whose interest in subway systems has led him to memorize the entire NYC grid. The five and a half year old's other interests include painting, computers, Italian opera and the Fibonacci Code.

When she first learned that her son was autistic, Jackaway was alarmed. She contacted other Donor X recipients using a Donor Sibling Registry. Locating six other mothers, she found three more autistic children and a fourth who was said to be “showing some signs” of autism.

After a period of “tremendous sadness,” Jackaway appears to have had a change of heart regarding autism. Asked if she wished there had been a test to screen for it, she responded:

I've done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn't Dylan...I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don't have autism; they are autistic. It's part of who they are.

I like that answer, but that’s not why I’m writing this, why I’m still thinking about it. Nor is the point of this story for me the implications in terms of genetic etiology. It’s the fact that a mother can express such positive regard, and that a child can so clearly have much to offer, far from being a burden on society, and still…this is how the story ends:

"Per CCB policy, the donor's samples were removed from the general catalog.”

Not just identified or labeled. Removed. As if another child like this one would be unacceptable. For anyone who doubts the implications of potential prenatal screenings, here is a wake up call. Autism, even “shiny autism,” even when attached to obvious brilliance and supported by a loving and accepting family, is still judged to have no place in the “general catalog” of humanity.

In 20 more days, April will be over. Not that I'm counting. Just being aware...


  1. Ugh-- I just read the comments on that story myself and couldn't help but be frustrated at how many people responded with "But that child can't be autistic! Nothing the article said about him was bad! He's just gifted!"

    But I suppose it is encouraging that CNN is communicating the positive side of autism.

  2. As you usual, you very eloquently state a very important point.

    I am starting to really, really hate the term "awareness." A collegue of mine (I'm a teacher) was all excited to tell me about some Nascar team who's got the Autism Speaks puzzle piece all over the car...I was with my best friend (who's not quite as bitchy as me, but getting there) and we proceeded to tell her what the Autism Speaks agenda is like. Her reply? "Well, at least they're raising awareness." I said "yeah, awareness of their desire for eugenics."

    My principal high-fived me at that point. :-)

    karen in ca

  3. argh Bev! I feel your pain. I just got here from You Tube where the Awareness videos are rife with syringes, Jenny Mc, and those vile Ransom Notes. I can't seem to go without commenting. Now I am chastised for saying "bleh" when I should've said nothing- if I had nothing nice to say.
    yeah, the comments RE Donor X, and the subsequent removal of his sample are infuriating.

  4. Not autism-specific, but just yesterday evening on my way home from work in the city, I saw some college kids trying to raise money for some so-called "disability awareness" project. Which sounded uncomfortably broad to me, so I asked what they meant by that, whether they were using the social human rights model or the medical model or what. The guy I asked at first just kept babbling about how they were raising the money and this would go to help disability awareness blah blah, no real answer. Then when he did sort of answer, the answer was something about having some event with children with disabilities where they show people that children with disabilities are "real people" too. Oh, and that they're "people first."

    Er. That's it? Nothing about helping make people aware of accessibility issues or human rights issues?

    Okay, admittedly, the sad fact is that some people still honestly DON'T get that we're "real people." But I think it would be more effective to let that be the SUBtext of whatever awareness-raising activities you do, and keep the focus on some other message that is more likely to lead to PRAGMATIC differences in our lives.

    Oh, and then he said they also had summer camps for kids with disabilities. (Actually he said "handicapped kids"; whereupon I corrected him and he apologized.)

    I asked if any adults with disabilities were involved with the program. At first he didn't seem to really understand what I was getting at -- he kept babbling about how the program was for kids. So I had to amplify, No, I mean in leadership positions in setting the agenda, etc.

    Answer: "Not that I'm aware of."

    So I'm standing there thinking, Er, that's a pretty big gap to have overlooked.

    He eventually explained that this was some fraternity group. I asked if they were at least working in coordination with a disability-run group in a situation where the disability-run group was taking the lead and setting the agenda with the fraternity playing a supportive role. I tried to make this point that this was really the more appropriate approach. And he kept saying it was a fraternity activity -- not really absorbing my message at all. When he did eventually sort of vaguely understand what I was driving at he said he wasn't really in a position of authority. I did ask him to pass my message along, but I'm not sure he ever really got why I was bugged by the whole thing.

    I was very off-balance throughout the whole thing so I wasn't as articulate as I could have been. In hindsight, I should have clarified/amplified that the reason I was bothered by his responses was because of the long history in which non-disabled people have taken the lead etc etc and it was more empowering to work WITH the disability community instead of FOR us. But I just couldn't get my thoughts pulled together on the spot.

    Sorry for such a long rambling comment on something not really directly related to your post (I'm not even autistic). I guess the topic triggered the association for me with yesterday's incident.

  5. Yes this opens up a can of worms for sure. We could have opted for Sperm donor or IVF before adopting and we chose to adopt. The issues go way farther than even screening for Autism.

    I like what the mom in your story said too. While watching some of the news reports I was horrified with some of the families they showed. One family showed a home where they put up wooden barricades to block the kitchen every night and walls that were shredded from children that were said to be Autistic. It was terrible. My husband and I watched in horror and were so disgusted with the program.

  6. That's so sick that they took him off the registry. This also makes a good point to those supremacist Aspies who say that "only low-functiong autistics should be prevented" that aside from this idea being wrong, it wouldn't even be realistic to assume that people would go along with that, even if there were genetic distinctions between "functioning levels".

  7. Anonymous: Yeah, I've had similar encounters with folks who think that just saying the organization "helps handicapped kids" is enough. I talked to a young man who was staffing a booth for a fundraiser of that sort, and I asked him similar questions. (Like, "Help 'em do *what* exactly?") He obviously knew absolutely nothing about the organization, and the booth didn't even provide any literature (aside from a folded card sealed in a package which you couldn't have until *after* you'd donated). I declined to donate because the kid couldn't give me any information, and he looked peeved about me pestering him with such questions. I'm quite sure he concluded that I'd declined because I was just stingy and just didn't *care* about "handicapped kids" -- after all, it was just a couple of dollars, and who wouldn't want to "help handicapped kids"?

  8. Oh, and yes, anonymous, your comment is definitely related to the issue at hand. It really is difficult to articulate what exactly is bothersome about certain aspects of "awareness", especially when the person you're talking to is so ignorant or so swept up in the Walk for X/Wear Ribbon for Y/feel-good fight rhetoric that they regard you as a bitter anomaly who's trying to ruin everybody's fun.

  9. Thanks, Evonne, for responding, re, "awareness" --

    I don't think the guy saw me as "bitter" (at least, I didn't pick up any negative vibes from him). I think he was more bewildered than anything about why on Earth I was objecting or why it should be so important to include disabled adults in a project that is about disabled kids or how I could be in doubt about whether the money was going to good use.


  10. I used to get involved with the yearly awareness campaigns about my own condition, but yeah, this is where it leads. The most newsworthy story is the one with the most tragic, heart-wrenching angle. And people who feel sorry for you - worse, feel sorry for your parents and everyone else around you because you don't really count - are not going to treat you as equal.

    At least with Autism Awareness you've got a lot of good bloggers with autism and parent bloggers expressing a far more positive, informative if far less dramatic message.

  11. I can't imagine my daughter without autism. Reading this made me so sad. I am going to try to just tell myself that anyone who would not have a child because there was a "risk" of autism does not deserve a child as amazing as mine, but as an autistic mother of an autistic child, I am not sure whether to be more sad or scared. Eugenics seems so viral sometimes.

  12. ok, today, me, as a certified member of this "awful spectrum" will sign an $8M contract with a Canadian agency that I brought to the company I work for. I do have my quarks. But it must have been my awful personality that got the work. xD

    Instead, the Canadian government agency told me that it appreciated my honesty and candor and that it was like a breath of fresh air for them to do business with me because they felt that the services I offered were real and verifiable and I wasn't trying to schmaltz them or gild any of my offerings. Instead they could trust everything that we agreed to in our statement of work. We were also more creative in solving some of their concerns and I was seen as an accurate and "straight shooter", whatever that means.

    Well, shows to go you there's probably room for a few more autistics on this planet. =P

    xD Please don't "eradicate me" xD


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